Total newbie to this site and a the first time I am writing on any website. I've been reading thru the discussions and WOW this would of been great info 25 years ago. I have had lupus for what seems forever, I have tried every lovely drug available and enjoyed all the side effects. "Prednisone" it is. Was never able to leave the miracle/nightmare drug. I am now dealing with all of the long term side affects of all the meds that I've taken and still am taking some. Reading thru the blogs brings back alot of memories of my ride on the lupus rollercoaster.
Welcome- there are several of us long timers here! Yep am there too with long term adverse effects from medications When I get the poor mes however I remember that when I was diagnosed in 1967 lupus was pretty much a death sentence- I was given less than 5 years to live The doctors sure have come a long way in learning how to manage this illness!
Welcome, I love this site. Its a special place for us & our family/friends to get & give helpful information as well as advice/support. I was diagnosed at 8 wasn’t suppose to live to 16, but I’m 41 now. I was blessed to have 1 child we both fought to survive but he just turned 14 this year. I to am a victim of prednisone both hips replaced several times, broken bones, lost teeth, over weight, blood pressure, diabetes & the list goes on. No meds work for me. My Rheumy says he don’t know what to do but try to control the pain & flares. Thank God for loving me. Hope to hear from you again soon.
Welcome! It's a great site! I am in there with you about the meds.
You got to hold on.
I am getting side effects, too-I was diagnosed in '91, and there was very little reading material and it told me not to read anything written 5 years before, or it would tell me I’d die within 5 years (right, Nicole?)
I also just developed diabetes. My has had me on osteoporosis meds for years. I passed out from dehydration a couple of years ago (from meds) and broke my coccxyal (?) bone, also known as breaking my butt, but I landed there on a plaster cat’s ear, so I can’t blame the pred. I am pretty fortunate that my rheum is so worried about it. Currently, I’m taking gout meds that put me to sleep all day , and I can 't sleep at night, but I have no new gout, and my doc and I thought it was cellulitis before, which had me very worried, since I kept getting jt. Lupus was tiring but not so disabling until I lost the plaquenil. Now it’s really rough. And he thinks I need exercise! I can barely walk, but I’m supposed to exercise to get my heart rate down. Exercise shoots it up to almost 150, and it should be around 90-100. I’m now estranged from my sister, which is very upsetting, and upset is the last thing I need in my life. Has anyone else had trouble with tendons/other connective tissue snapping? My rheum says it’s not that uncommon in lupus patients, and my other muscles etc will compensate. This has happened to 2 fingers, and I’ve compensated, though I’m more likely to drop things with that hand. Now it’s happened somewhere in my ankle or calf and it hard to lift the toe end of my foot from a flat position.